Talking to anyone about ones true emotions on any subject is not always easy, especially to strangers on a Talking Health Matters web site, but I will give it a try; perhaps some of you have had similar experiences.

I was expecting MH who has worked with me for 5 years this month, to say she was giving in her notice because for the past year MH and her hubby have been going through all the hoops, and believe me the authorities leave no stone unturned so there are many, many hoops to jump through, to become foster parents and last week it was confirmed that they had been accepted. I was thrilled for them both and was already emotionally ready for her to leave. Her job along with MF, who is dropping a night, was put in the job section of the local newspaper, and I am, as I write, waiting for returned application forms. A situation I have found myself in a few times since 2006 so why are things different this time, the answer is J and her dog Sally.

J has been with me, as I said just over a year, and does my weekend shift 10 am to 6 pm. I really thought that we would grow old together, but that now will not be happening. J is a great cook, she used to be a chef on the rigs but left to get married and bring up her family. Her other job is working with people with learning difficulties which she loves, and the organisation that she works for has offered her a position which includes her love of cooking that J just will and could not turn down. If all the plans in regards to this position fall into place today, I will be getting her months notice on Saturday. J, along with her dog and mine, often go out at weekends for long walks along our coastline. This I will miss terribly so will Jack and Molly my two Jack Russell’s. There are lots of other things I shall miss about J , her very dry sense of humour, nipping to the bottom of my garden for a quick ‘tab’, her Scottish accent, and most of all J and Sally, who has a unique bark to get your attention and their being themselves.

J told me about her decision and the reasons for it on the Saturday and on the Sunday while I was in church, I found myself fighting back tears as the reality hit me that my friend cum carer was leaving. That fact made me realise that no matter how hard I try not to get close to my care team, in some cases I just fail, as in the case with J. I now have to face the prospect of trying to fill her post, easy to fill the post but hard to find anyone like her and Sally. So why this narrative?

I realised that I may not be alone in feeling as I do when a member of my care team leaves. It also appears no one in authority has ever given it a thought about how some who are dependent on the people who care for them feels when that person leaves. My care team are the most important people in my life; I have no immediate family, and friends not connected with my care you could count on one hand. My care team share with me my good and bad days. They share with me and make it possible for me to live my life as I wish to, whether that is driving my power chair from Lands End to John o’Groats, working as a volunteer with McMillian Cancer Support, feeding me, or even taking me to the loo, someone from my care team is there with me. I slowly build up a trust with them, I hear about their lives and they share mine. I share with them, some more than others, my secrets, fears and joys, then that person is no longer there as in the case of J and a few others. To me this whole situation is like living through bereavement but without the emotional support you need. I am lucky this time as there is one particular carer who is a third year counselling student and whom I can talk to, but I have just learned that due to an accident she is off sick for 6 weeks. I feel a lot of phone calls will be going in her direction as this time I work my way through how I feel.

I have been asked, for this narrative, to log what happens to me over the next few weeks, this I will be doing. At this precise moment I am waiting for a text that will say if or when J is leaving. I should know early evening. Who knows I may be lucky it may not be until the New Year.

It is 5.30, time for Neighbours on Channel 5 and I am waiting for J’s text. I am feeling unsettled and every time I get a text I jump because I think it is J… Must be like waiting for any verdict especially when that verdict will have an impact on your life.

At 7 pm my text went off, no it was not J it was someone answering my add in the paper sending me her postal address. Details will be put in the post tomorrow. My waiting goes on.

It’s Thursday 3 pm and this morning I received the text from J, I will not revel the contents but will tell you that it is official, on Saturday J will be formally handing in her notice. I have so many emotions churning around in my mind that half of me wants to cry, the other half is excited that a new era is about to start in my life. New carer staff, new who knows?

Everyone is telling me that everything happens for a reason. How many times have we heard that old cliché? How many times has it proven to be true? When one door closed another opens. We have all heard that one. I think I am getting to old for changes in my life, but saying that, I have three new volunteering projects that I am hoping to get involved in. I have attended training sessions for two of the project and the third I will attend in December. Yet another case of opening a door and seeing what is the other side, but you know what I had started to open these doors before J told me her news. I just want things to stay as they are but I have no control over the situation. I am feeling helpless and if I dare say the D word, Disabled.

My staff are free to leave when ever they want, and do. But with employment law as it stands, I cannot ask someone after one year of working with me, to leave just because we do not get on or I don’t like them.

I feel very lonely at the moment. I feel I have lost control of my life. Changes are being made that I don’t want to happen. J, I know you will read this narrative and I want you to know that you and Sally will be missed terrible. I know we all say we can keep in touch, stay friends but that will very probably not happen.

Right now I just need a very big hugggggggg. So not going to happen. Maybe my next piece should be on the subject of touch and what it feels like not to have it, unless of course someone is doing my personal care. A different touch to what I am talking about, but I think you know that.

So what next.. Before Saturday, when J returns to work, I will put the add in the carer required column of the job section of the local newspaper for J job, that will go out next Thursday. I will get about 25 replies and information packs will be sent out. If I am lucky 20 will be returned and I will offer them an interview but only about 6 will turn up. 2 will make it to my home and one will be offered the job on a trial of 4 months.

As regards J I know what the next four weeks are going to be like with J. We will both try and carry on as if all things are normal. This Saturday J will come into work. I shall tell her that I am happy for her, we shall talk about her new job and the dogs will chase each other around the house. The kettle will be put on coffee. I will then be taken in the garden if it is not raining, coffee and tabs for J. I have this Saturday a plan, best to get out and about. Why, for me to get away from the reality I am now in. We are going down to the beach, meet up with B, run the dogs, have lunch of fish and chips and talk. I need some talk time with B by myself, but I am not too sure when that will happen on Saturday, if it happens.

As I am been honest with this web site, it is times like these that I just wish it would all stop. That I could just say enough is enough. No more social services, no more fear of my care package been cut. I have this fear at the back of my head all of the time. No more dependency on others to enable me to do things from opening my gate to let me out, to feeding me, and to wiping my bottom. I think you know what I mean.

I know that I am very lucky. I have a nice house, people around me that care for me. I am in very good health, but I am not free. I would give this all up to be able to put a pack on my back, Jack and Molly on their leads, just close my door and go where the wind blows. To be free again from my dependency on people. But that is not going to happen unless there is such a person as a Fairy Good Mother.

7.00 pm Thursday. T has also given her notice. T only did 3 hours per week for me and has now found a full time job. T will be missed very much. This all goes to show me how reliant I am, a reliance I hate, on total strangers to run my life. Total strangers whom I have only meet because of an advert in the newspaper. If I was disabled as I am with a hubby and family around I am sure I would feel a lot different. Love of a fellow human being must help someone in my position to feel wanted and valued as a human being. This is a feeling I am not getting right now.

Monday, I need a hug. I can tell you, I am in an emotional mess with J leaving. This forming a relationship and trust with someone and their dog just to have it broken is a killer. From the short list (the two jobs were advertised) only 2 said they were still interested. The two I would think could take J place have said no. It is like having any relationship broken up; it is like having a friend saying they do not want to play with you anymore. It is a bereavment. I must try harder not too get close to my carers, Keep that professional line. How long can I keep this up time after time?

I know that I will work my way though all the feelings, good and bad, my care team will see to that. I know that tears will be shed when J and Sally leave for the last time, but there is still a lot to do before then. I know that a suitable person will take their place in my care team, but that will take time.

Final update, 3 weeks later (Christmas approaching), J has now left the building. We are to stay in contact, just hope that is so. We said no goodbyes, no tears, but I was fighting back the tears all day. The final lift in the hoist, the final coffee, meal, that sort of thing. I shall miss J and her dog immensely but have the New Year to look forward in a few days. I have signed on 2 new staff, and there are a number of new projects for me to be involved with but these are all material things, it is the relationship that we have with people that is the most important thing, well I think so.

All good narratives should finish on a positive note and this one is no exception. So to finish this narrative, I would just like to raise my glass to the New Year and bring on all that it holds no matter what it is. Main thing is to stay positive, stay focus and enjoy the moment. This I fully intend to do.

I hope this narrative has been of some help to you. That someone in authority will realise that perhaps they should look into how they can support people, if they need it, whose carers have moved on.

ML

Right, well I was, first had problems with riding a motorbike. The problems I had was I changed from being a custom bike where you sat with your feet forward to a sports bike and I was starting to get cramp in my legs and I kept stalling it. So I changed all the bits on the motorbike thinking it was the clutch and then one day I couldn’t get my foot out from under the gear lever to change gear so I thought there was something wrong so my wife decided I had to go to see the doctor.

Went to see the doctor and he referred me to a neurologist, and I went in to see him on I think it was June 3rd 2003, and he basically had me walking down the corridor, had a look at me on the thing and says ‘I see what the problem is’. When I came back in the office he says ‘is your wife with you? Would she like to come in’ and that’s when I thought ‘there’s something not right’. so my wife came in, basically sat down, she asked him, he asked her a couple of questions, ‘did I have a tremor, this that and the other’ and bits and pieces and he just turned round and says ‘aye you’ve got Parkinson’s’. Which, I just sort of like looked at him in disbelief, you know it was quite a shock but so like it was basically, ‘you’ve got Parkinson’s, we’ll have you in the hospital in a couple of weeks to do all the tests and make sure’ and within a couple of weeks I was in hospital for like two days where they did all the tests and to make sure that it wasn’t something like copper poisoning or, because I used to work in garages before, but I was actually an HGV driver when I was diagnosed.

So went into hospital and had all my tests done and it was basically ‘you’ve got Parkinson’s, we’ll start you on medication’. And they started me on half a tablet of Selegline, I was on that for about four months and then they upped it to one and then I was on one three times a day and they also introduced Mirapexin over the next couple of years. The problem I had with the Selegline was I’m quite compulsive anyway so I would go and play on the computer for like eight or nine hours, no problem but it was getting too hard with the Selegline, it was disrupting my sleep patterns so that when I would stop on the computer I could be there three days and then it would go, I’d just konk out and I would go to sleep for 12 hours. So they took me off the Selegline and just had me on Mirapexine, I still go on the computer loads but not as much as I used to.

I’m just trying to think which one I went on next. They had me on Mirazapine which was to help me sleep and because I get terrible cramps in my legs, I’m on Quinine. We were on holiday in Crete and we were told about a lady whose aunty had Parkinson’s and she had terrible cramps in her legs and she used to drink tonic water, well I don’t like tonic water because it’s absolutely foul, so the nurse at the Parkinson’s Clinic said ‘well we can give you sugar-coated tablets ‘so you just take the tablets and that keeps my cramps at bay.

Then because of the Mirazapine, I was starting to have violent nightmares but she would start screaming and shouting in the middle of the night, Sandra would just about pooh herself so she would wake me up and when we seen the doctor next time I went on Clonazepam I think it is which is an anti epileptic drug but it stops you having, you don’t act out your dreams so that was the next one they put me on and then with the Mirapexine I’m taking, which is nine tablets a day I was having problems with my legs swelling, with the oedema in my legs so they’ve reduced the medication now down to two Mirapexine, three times a day and I take four Stalevo 100mg whereas I was on 75mg, three a day, now I’m on a 100mg four a day so that tends to level that out a bit. But I’m back at the hospital again next month, or December and they’re to have a play around with it again because they’re trying to get me on the slow release Mirapexine which doesn’t have the oedema effect in your legs.

I don’t work now, when I was driving an HGV wagon I found that I was tending to leave my foot on the clutch quite a bit. But the firm I worked for, I had the same wagon all the time so I could work around it and changing gear on my motorbike, I just used my whole leg because I still had my motorbike for a couple of years after I was diagnosed. The, it got to the stage when I got made redundant from the firm I was working for I went back on the agency and I was in different wagons all the time and I couldn’t find the righting point on the clutch, my leg would just freeze, so particularly as you lift your leg straight off the clutch and (inaudible – bang it … under a trailer) or press the clutch back down again and start again and I found it was that stressful that it was getting to the point where it was dangerous so I decided to see my doctor and he was a bit reluctant to sign my medical forms to say that I was unfit to drive a HGV; so we sent the forms in for that and the, I got the letter back from the Ministry of Transport saying that, not the Ministry of Transport, the DVLA saying that they were withdrawing my HGV licence but my car licence and my bike licence would remain the same, which I was quite pleased about ‘cos I like my cars.

And I went to see the DEA, the Disability Employment Advisor at the Job Shop and she said they were starting disabled people at which was action for the phone calls for people who had gas leaks or something the matter with their gas supply. So I went and I worked there for a year and then they decided just before we started there that they were shutting it like in a month’s time but it went on for a year so before they decided it was going to completely shut and I transferred on to assigning the gas fitters for all the different leaks which I found was quite stressful so I packed in working there and I was advised at the hospital because the stress was affecting my symptoms, to not, like obviously your health was more important than working for a living, so I went on to, I’d already got my disability living allowance for the lower one with care because I couldn’t like hold a pan, make a three course meal so I was on that one and as my cramps got worse and my stiffness got worse then we applied for the DLA, the higher rate and I got that and I got the mobility, so we had a little automatic car which we ran about in and my wife was still working so we were looking at, I mean we were having to pay the mortgage, we were having to pay the council tax, pay for the prescriptions and pay for all our other things so we went to see the DEA again and said if my wife stopped working, what would we actually get in benefits? And they wouldn’t tell us, they would tell us the other way around, they would say if you were on benefits and you’re going to take a job, they would work out if you were going to be better off in the job or not. But they wouldn’t work it the other way round if you were out of work and one of you wanted to like stop work to care for somebody, they wouldn’t tell you how much you would get.

So luckily my wife’s employer turned round and said ‘well take a year off, see if it works out; if it doesn’t work out then just come back to work as normal and we’ll just put somebody in your job temporary’ and within two months we literally worked out that we were better off because we didn’t have to pay council tax, I didn’t have to pay my prescriptions which was like four things a month, we got help with paying the mortgage, so that we didn’t have to sell the house and we actually got some income support. With the income support you got all the other benefits included; whereas if you couldn’t income support you literally had to pay for everything.

That was up to about three years ago and then since then it’s just been going back to the hospital but I actually, I’m the secretary of the local Parkinson’s branch. I started out as treasurer and then the year after that somebody else came on as treasurer and I went in as secretary, ‘cos we’re using a computer all the time, I can like, like I print out all the newsletters, do all the programmes and bits and pieces but I’m finding that’s getting a bit hard now so I’m playing with the idea of dropping that next year and letting somebody else take over as the secretary. We organise like Christmas lunches, we organise days out for the members, we have a lot of paperwork now which makes it a lot more stressful because since it became Parkinson’s UK, we now have actual paid staff in the North East and they’ve got certain targets to reach and you’ll get a clash of personality between one of the, I mean one of the members on the committee won’t like the way something’s going because we were told there’d be less paperwork and I mean now there’s more paperwork. We’re like, we were just in a branch development meeting and that was like 18 pages of paperwork so the, we’ve got two or three new members on the committee who are quite articulate and they, they’ll turn round ‘cos they used to think it was us working ourselves like because we didn’t want to do the bits and pieces but they can get, other people can get it across better so you tend to not just have one person taking all the flack.

But, last year I went to the Parkinson’s annual general meeting which is the first time I’d been to one. I’d been to one for the YAPPAS which is the Young Parkinson’s group in I think it was 2005 or 2006, I’d met a Parkinson’s UK worker and he invited us down to the Biannual, they used to have it every two years, they used to have like a general meeting. And my wife went with my and my wife like is horrified by the fact that I’ve got Parkinson’s that’s why she’s not here today ‘cos she’d rather keep it at arm’s length, whereas I tend to, if somebody’s, like if I’m talking to somebody I’ll tell them I’ve got Parkinson’s Disease, it doesn’t bother me. And, but when we went to the YAP meet, there was quite a few people that were really bad. And my wife is of the opinion when she looks at people like that, saying well what happens if I’m like in ten years time, how’s she going to cope. So she’s been to two Parkinson’s meetings, the first one was, it was one of the members of the committee’s going to dance school and they had all their kids doing the ballet dancing and what have you and I mean it will sound funny but my wife says, we walked in and there was all these girls dancing about in leotards and all these old people sitting there shaking, she says it was like going into a paedophiles’ meeting!! So she went to the tombola which was the next one but there was two or three people who were quite bad, I mean they’re not with us anymore, and she like tends to look on the negative side, whereas I’ll just poddle along my and it doesn’t particularly bother me. So she won’t go to the meetings now and she’ll like, she’ll not go to any of the AGMs or anything because there was one of the lads at the YAPMAC meet, he was just curled up in a ball with his legs and everything had gone so stiff and they would come in and put him in a chair and he was literally sat there all day and it like frightened her quite a bit ‘cos she looks like more into the future whereas I live more for today.

The, we’ve got a grandson who, he’s just turned four and he keeps me busy all the time so we’ve just getting him introduced to speedway because I used to ride speedway bikes years and years ago and we’ve bought him a little motorbike but he’s too, he’s slightly too small to go on it at the minute so we have to go on with him so it gives us an excuse to be on it. He can be a right worky ticket but it keeps you on your toes.

The latest thing is, I mean when I first got my disability living allowance for mobility we decided because we’d always had old cars, that it would, like it would be nice to have a new car where you didn’t have to worry about it breaking down or anything so we bought a Mitsubishi and we had for that three years and it was quite relaxing because you would go for a drive somewhere and we’ve got a caravan, so it pulled the caravan and you weren’t worrying, saying ‘what happens if something falls off it or whatever’ and at the end of that three year’s contract we thought well we’ve been paying £50 a week for this car, normally it wouldn’t cost us that much to run a car, which the cars before we’d had, we didn’t have a problem with, so we bought a Renault Scenic and it was low miles so we thought it was low miles and the, we, we ended up putting three tyres on it, getting some repairs done to it and then the timing belt snapped. So we worked out it was costing about £10 a week more to run our own car than run a mobility car so we decided to go for another one and I’ve just got a little Kia Soul there which is quite nice and we’re, they fitted a tail bar for it so it pulls the caravan whereas the car what I had before, I fitted the tow bar in and I found I was having loads of problems and where at one time I would think nothing of wiring in a tow bar and fitting it but I was having problems trying to hold wires with one hand, it couldn’t, wouldn’t do as it was told and you’re trying to solder wires and everything.

So I got quite a bit emotional and upset about that but normally I just get on with things I don’t have so much a problem as a lot of people where they can’t walk very far, I can, sometimes on a good day I can walk for miles, bad day, I’m stuck; but other people, their problems are every day so I’m quite lucky in mine’s quite slow progressing because I’ve been diagnosed …. seven years now and I’ve seen people who were diagnosed later than me and they’ve actually been wheelchair bound for more than a year now and they’ve; I mean there was one lad we had who had MSE which is very often diagnosed as Parkinson’s disease and he passed away at the beginning of this year but I mean we still see his wife because she’s on the committee. He’s quite a miss because he was one of our committee members. The, I’m trying to think what else. So I go to the hospital every three months and they twiddle about with my bits and pieces, think like my medication and what have you and what problems am I having and then I’m also involved with quite a few research projects; the PROMS Study, I’m involved in that and I’m on the PPI Panel for DeNdron which is neurological alliance, they deal with a lot of, where they set up the research projects, we get involved with them so that way I’m quite busy with that; my committee paperwork takes up quite a bit ‘cos I mean newsletters are usually eight pages, so I have got to design all them and everything for the branch.

But, I’m trying to think what else I can add to that? I mean all the house I did myself when I was first diagnosed, we put the kitchen and everything before I got too bad and we’ve also adapted the house by that door’s wider so if I’m ever in a wheelchair I can get through the whole house. I’m widening the other door because we couldn’t get it to open wide enough to actually fit it if we’d, thingied it, because these ones we didn’t leave the doors on, we left the doors off to make it easier for me to get round. I’m just trying to think what else. I mean I usually get all the jobs to do but they take us longer, I mean putting the kitchen in took us six weeks where normally it would have took us two weeks. And other bits and pieces like decorating and what have you, I can do if it’s on a good day but if it’s on a bad day it just gets left. That’s it. I mean we will be in the caravan on holidays so I don’t have a problem with that. The, we’re spoilt for a caravan because my brother just phoned us up one day and said would we like the caravan and we thought it would be some old, tatty thing and well you’ve seen it outside, it’s quite a nice little caravan. So we’re, basically we’re not tied to going away whether the weather’s wet or whatever because the caravan’s got heating in and everything and hot water so you don’t get stuck for stuff whereas in the old days it was a water pump on the floor and freezing cold water, you had to boil a kettle for everything!

The, I’m just trying to, what else to think, I mean we have meetings every month at the Parkinson’s branch so I organise all the, like the speakers or if we’re having like a sing-along because we try to have one serious meeting, one light hearted meeting and I like; everybody is on the phone every five minutes, ‘I’ve got something the matter with my computer, can you come and fix it?’ so I end up doing that. I’ve got one to do today and I’ve got one to do tomorrow. The, one of the little lads who’s the vice chair, he was computer phobic before I, I sold him a laptop which my wife had had and when she got her new laptop she was selling the old one, so now he’s worse than me for being compulsive on it so he’s getting into trouble off his wife, I get into trouble off my wife for spending too long on the computer but since my wife got her laptop she’s on it nearly just as much as me now. I mean I’ll be upstairs and we’ll play scrabble, she’ll be down here on her’s and I’m upstairs or I’ll be sitting with it on, my laptop on my knee and I’ll just be like that I mean we play scrabble with people all over the world and I’ve just had my aunty over from Australia and she, they were over for his new book so I can, now she’s back in Australia I can use Skype and I can speak to her and see her at the same time so that’s quite good but you’ve got to stay up in the middle of the night with it being the time difference. I found since I got diagnosed with Parkinson’s I didn’t drink a lot before but I used to when I was younger, but before I got Parkinson’s but since I’ve had Parkinson’s, it doesn’t bother me going out for a drink, I’d rather stay at home. But my wife’s family are quite supportive, they’re always asking how I am and what have you.

(Inaudible) well I see my sister quite a bit because she’s a pain in the backside, she’s always over wanting something or other and I see my wife’s family who just live round the doors more than I see my family ‘cos my sister who I get on really well with, she lives in London so I only see her when we go down there; my brother, he lives in Durham so I see him every now and then usually at funerals or weddings! That’s about the only time you ever see the family and my other family, they’re like wider family, live down in Leeds and down south so we don’t see much of them. I mean I’ve got another funeral to go to next week so that’s an aunt, my dad’s sister, so I’ll see all the family then and then it’s … I find with the Parkinson’s, it plays hell with your emotions, you can go to a funeral and not even know the person and cry your eyes out or you can go to your best friend’s funeral and be alright. You can sit and watch something on the telly and get all emotional about it even though it’s just a play. So I found that’s quite a problem I have with Parkinson’s, the, because people look at you like, think you’re daft. I mean I don’t have that much problem with my speech but some people, somebody in a pub will think they’re drunk or they’re, or will wonder why they’re shaking so much and the thing is, when we go out, we go out with a group of friends, we don’t have no problems with anybody wondering, like thinking you’re drunk because you either are or you’re not.

The, we’ve got one dog now which my wife takes out all the time, she has quite a few problems so I usually get dragged out to take her for a walk but half the time I’ll say ‘well I can’t be bothered’ if my legs are stiff or whatever. I ended up with, not a hernia but it’s where the muscle wall splits; so I went to see the doctor because I thought it was a hernia at first and he said ‘you’ve got to lose weight; go and see a physio’. And the physio didn’t have a clue when I went to see him, because she says ‘you need to lose weight’ so I joined the gym, well I found the gym was boring because you was sitting, running on a treadmill or you were, I couldn’t do weights because this thing would pop out and then we found out eventually what it was and it’s just something which pregnant women get and because I was overweight, the muscles had spread and the thing popped through. There was no, they didn’t operate on it and there was no health problems with it so I’ve now, now I go to the speedway on a Sunday because they race on a Sunday night but we have to cover up the dog track with plastic sheets, and it’s, so I give them a hand to help them to do that and I’ve managed to lose half a stone in the last six months so that’s not too bad. I play a lot on the Wii, Wii sports and everything, now the grandson plays on it more than I do but we’ve found the problems with the Wii was when you put say the step, where you do the step ups on, because with the Parkinson’s your leg wouldn’t do what it was told to do you would step on the thing, you were supposed to go left then off and like right and then off, your legs would move so you lost the rhythm so that used to get quite annoying. So I stopped using that and then when we got the Wii sport, the Wii fit plus the, it came and you could also alter the tempo so you could go faster or slower so I found that was easier so I can do now like 1,100 step ups in five, is it ten, fifteen minutes. Now, whereas on the other one you would go on for it about two or three minutes and say ‘I can’t be bothered with this’; same with the hoopla one which is supposed to be good for getting your, the midsection down. You couldn’t do that because you couldn’t go round and round because you would start, one leg would decide it wasn’t going to do something. I find the balance game’s good on it because you don’t have to move fast, you can just move your body about on the board, that’s quite good.

I’m just trying to think what else to put on there.

I don’t have a motorbike now, when I got the motability car my wife says we can’t have a car and a bike so the bike went; but it was a case of the bike was quite heavy and it was quite a big bike, 800cc and I found that when I was in traffic, you would get stressed because you were weaving through the traffic and everything and cars is coming from all angles, I used to get more problems with my legs, not being able to get my leg off the foot peg and one day I was going to fall off so it was just as well that I sold the bike. And like I say the grandson’s got a little motorbike now, he loves it, we have him up the Speedway on a Sunday before the race meetings and he’ll, I think he’s done more laps than I ever did at Brough Park now. There’s a couple of young lads up there and they’ll borrow his bike because they fit on his bike, they’re a little bit bigger than him so his bike gets quite a good run out. So I’m in the process of building him a proper, miniature speedway bike. So we’ve got all the (inaudible) and everything, it’s just a case of borrowing a welder off somebody and welding it altogether in the right shape, the right size for him.

But I keep myself busy, if I’m not doing something on the computer, I’m either in the garage messing about or making something or other because I’ve still got all my tools and everything from when I used to be a fitter. I don’t know whether I got Parkinson’s through all the chemicals we were involved in, I mean you used to think nothing of eating your sandwiches with manky, black, dirty hands covered in oil. I worked down the pits when I was younger which was, you were eating half your sandwich with coal dust. The chemicals in the, like car, I used to be a car mechanic and a bus fitter and you were like working with oils, fuels and you’d think nothing. You would get covered in oil and you would just work through to the end of the day and then get a shower when you went home. So I don’t know if that had something to do with my Parkinson’s? I mean there’s a lot of research now where they think it starts in your stomach, the problems, and then it gradually migrates up. Because from, since I’ve been diagnosed, I mean I basically know more than the average person now knows about Parkinson’s because I’ve looked at everything. I’ve done a couple of articles for the YAP magazine when it used to be out, one about riding a motorcycle and Parkinson’s and how you can convert it to a trike so you don’t have to put your feet down and the other one was starting at the beginning of when I first got diagnosed, was the ups and downs. I had a lot of problems with insurance companies. Then, just by accident I found out that I could claim on the critical illness insurance that I’d taken out on the mortgage when we moved into this house and it was only because I was on the insurance company’s website and I happened to be reading the bits and pieces when messing about on the computer and it came, Alzheimer’s Disease if diagnosed before the age of 65 and then along came Parkinson’s if you were diagnosed before the age of 65. So we went to see the estate agent who we bought the house through and he hummed and haahed and he says ‘well if they say no, they say no and what have you’ so he didn’t seem to be doing anything so we took over it ourselves to do it and we sent all the forms off and everything, the letters from the doctors and what have you and gave them permission to contact the doctors and I got a letter back saying ‘our medical panel have like looked at your case notes blah, blah we don’t think you have a definite diagnosis of Parkinson’s Disease; what you have is early onset Parkinsonism Syndrome’. So at the time I’d only just started going to the Parkinson’s, which was the Parkinson’s Disease Society then for the meetings and I was speaking to the chair then and she said ‘when you go to the hospital’, which was like a fortnight later, ‘take the letter with you and show it to the doctor. So I went down and I was like seeing one of the professor’s associates and he says, I says ‘well I’ve got this letter from the thingy saying I haven’t got Parkinson’s, I’ve got such ‘n such’. So he says ‘leave it with me, I’ll go and see’ the doctor. So the doctor came in and he says ‘insurance companies! There’s my contact details, tell them to write to me’. So two weeks later I got a cheque for £20,000 through the post so that sorted that out! I then, when I stopped driving the wagons, my driving licence was insured through the union so they decided I wasn’t using my driving licence at the time I was diagnosed; so I says ‘well I was working driving 44 tons artics; what was I using my driving licence for … paperweights?’ So they gave in and I got £7,500 off them so that made life a bit easier. We went to Egypt for our 25th anniversary two years ago, three years ago now and the difference when you are out there because of the heat, was your Parkinson’s symptoms were halved, it was the same when we went to Crete and it was hot. Because of the heat, I don’t know what it is, it’s something because the cold doesn’t like Parkinson’s, we had less problems when the temperature was high than what it was you came back here and you went, because you don’t shiver, you actually shake with your Parkinson’s and you’re freezing cold; but I don’t know. Is there anything else I can add to that?

Well if you could just talk about your medication, how important it is for you and if you’ve ever had experience in needing to take medication while in hospital.

Well I’ve never actually been in hospital since I was in getting diagnosed so I haven’t had a problem with that. The only like problems I’ve had with my medication was the Selegeline affecting my sleep patterns; then the Mirapexine I with my swollen legs. There’s a lot of people have problems with Stalevo but I’ve never had any problems with Stalevo, it just turns your pee bright orange so you can tell if somebody’s on it when you go to the loo. The Metazapine I don’t take all the time because I know if I’m going to go to bed, I’ll go to bed; other times if I think I’ve got to stop, I’ll take my medication before I go to bed, I’ll be on the computer within half an hour it’s a case of you’ve just got to go to bed because you’re going to fall over. If I don’t take my medication, like if I’m doing something, like say working on the car when we had our own car, the, you would know because you think, like your hands just would stop working so it was time to go and take your pills. But I mean I’ve got a pill timer and everything but I never ever take them on time because I’m supposed to take one at nine o’clock but I’m usually not out of bed at nine o’clock in the morning. The problems I had, the nightmares were controlled by the Clonazepam I think it is? So that’s caused that and I haven’t got that problem anymore so we’re just waiting now to see if when they changes us on to the slow release Mirapexin, if it stops my ankles swelling ‘cos when I reduced it to two tablets three times a day, one ankle decided it was going to go down but the other one hasn’t and you’ve just got to bump your leg and it actually breaks the skin, normally you would just like ‘oh it’s just felt as though I just scraped it’ and never had any problems but with the, with your oedema ) legs if you say bang it on the corner of the bed or something it will actually cut and break the skin. My quinine works great for stopping the cramps. I’ve also got other things which the physiotherapists have told us to do, like bend your toes back over and wrap something through your toes but with the quinine I haven’t actually had to do that. I’m just trying to think what else.

I used to, when I was on the Selegiline, I could just fall asleep anywhere, I mean it just depends if I’m a bit tired I can still do that but it’s nowhere near as bad as it was. The, I’m just trying to think what else, I don’t take any others, so I’ve gotmyMirapexin which is two three times a day; myStalevos, 100mg four times a day; me, on a night time I take one Metazapine, one quinine to stop the cramps and then the Klemazapine I think it is, which stops the nightmares and that’s basically all the pills that I take at the moment. And like I’ll go next, in the next couple of months when I’m back at the hospital they’ll probably change something and try something else as well. So we’ll just see ‘cos like each time you go they change it, try and tweak it a little bit ‘cos like I say everybody’s different, nobody has the same medication. ‘cos people come up to me and say ‘well, how do I take this one?’ I say ‘well it’s no good asking me ‘cos you need to speak to somebody medically trained, not me’.

The other people that I know who have had problems is like where people who are on patches, having trouble like concentrating; my concentration’s shot to pieces, I mean I’ll flit from one thing to another. I’ll go out in the garage to do something and I’ll come in five minutes later to ask my wife what I went out there for! But I don’t know, I’ve always been, my short term memory’s always been crap anyway. like you’ll be out in the garage and you’ll come in for something and it’s gone and you think ‘what the hell did I …’ (inaudible) go back to the garage and you stand out in the garage and then ‘ah I know what it was I came in for’; you walk back in, you’ve forgotten again. So that’s a problem with the Parkinson’s. The, when I first started on the tablets you get quite paranoid, I still do, I’ll go for something and I can’t find it, so ‘where the hell has my wife put that now?’ and it’s, you hunt all over the place, I mean I’ve put padlocks on things and thought ‘where the hell have I put the keys’; I’ve hunted the house for the keys. I’ve left my keys in shops. I mean I was at my friend’s car shop the other week, my wife had to go up on the Monday and my keys were sitting on the counter. I’m just trying to think what else; the problems I’ve had.

I don’t have any problem when I drive, like I’ve always been the same when I drive slow I don’t concentrate, if I drive quite fast I concentrate so but I don’t nowhere near as concentrate as much as I used to. I mean I’ve like raced cars, rallied cars, raced motorbikes and never had no problems with concentration like that but as soon as I start going slow I start to wander about which is pain with the caravan on because you’re sat at 55, 60 miles an hour with the caravan on but you’re that busy looking to make sure nobody’s, like wagons are overtaking you or anything. You tend to concentrate more that way. I’m just trying to think what else.

I mean the first thing my daughter said when my wife told her that I’d been diagnosed, which was, you know it was at her 18th birthday party, the, two weeks before I was diagnosed and people were coming up and saying ‘why’re you not getting up and dancing?’ Well you couldn’t move in time with the rhythm of the music because one side wouldn’t go, so that was a bit embarrassing. But the first thing she said when I got diagnosed, I mean she’s, 2003 so she’ll be 17, was ‘is he going to die’ (laughter) and she says ‘no, no it’s not as bad as that’.

And some of the things we looked at when we were waiting to go to the hospital to get diagnosed was, we’ve got you know like a disks??? free on the magazines and it was such ‘n such medical adviser and this that and the other so we were putting all the things in and it keep coming up with motor neurone disease which I thought was not very nice; but obviously when we went to the hospital then we were told it was Parkinson’s, the one thing that really bugged me was, you weren’t told where you could go to get help or find out about Parkinson’s disease, it was just this ‘there’s the door, come back in six months and we’ll see you in six months’. Now that’s been a problem with 99% of people, it’s one of the bugbears that when we were going to the PPI panel with DeNdron that we don’t get told ‘oh there’s a Parkinson’s disease society, they have all the information for everything and they’ve got, you know 600 leaflets you can get’ and you’ll get somebody new comes to the Parkinson’s and they’ll say ‘well they just told me I had Parkinson’s and that’s it’ and you think ‘well that’s the way it is’ I can understand why because talking to other people, they’ve said ‘well they’d rather give you a diagnosis of Parkinson’s disease than something like motor neurone disease or something else’ so it’s, I suppose it’s more of a relief but the thing is, if they give you a load of information, you would just put it in the bin. But if they just says ‘well this is a contact number for if you want to speak to somebody who’s got Parkinson’s or is involved with somebody who’s got Parkinson’s or like cares for somebody with Parkinson’s’ they can get what their take is on the disease. So that’s why when, now when new people come to the Parkinson’s I’ll say to them ‘if you need to know anything, my phone number’s there so you can either phone me up or you can phone the thing up or you can phone the help line’ but the help line is down in London so it’s basically somebody just listening to what you’ve got to say, they can’t really like one to one with you where we can at the Parkinson’s, at meetings.

I know all about deep brain stimulation, we’ve had a nurse in talking about that and I’ve had three friends at the Parkinson’s who had it done. one had problems, he got infected so they had to take the electrodes out and put new ones in. another lad was really bad and then he was quite good once he’d had the deep brain stimulation done but now he’s starting to drop off again, he doesn’t come to meetings anymore now because he’s quite bad. And there was a woman who, she was keen golfer but she’s stopped playing golf because of her Parkinson’s, she had the deep brain stimulation done and now she’s got a handicap of eight on the side of the, like on the golf side but the thing is with the drugs and that, that are coming through, you’ll go to these like seminars which we’ve just been to one in Glasgow with the congress and you find out that it’s taken like ten years for a drug to be developed so there’s drugs that are being developed like now; we’re not going to see them for another ten years and then you’re going to have to fight with your neurologist and what have you to try and get them. Whereas at one time the neurologist just wouldn’t tell you about them, now you find out about them, you go and see your neurologist and say ‘well what about this one’ and it’s a new drug so they don’t want to give you it because they’re not sure if it’s been tested enough or; so now they have a thing which is like shared responsibility whereas you share the responsibility of, because if the drug’s going to give you cancer but they don’t know about it yet, then you could turn round and say ‘well you used to prescribe me this drug and it’s now given me cancer’ whereas if it’s a shared thing between you and the doctor’s, they can say ‘well you asked for it’ so therefore you can’t, it basically takes away the worry that the doctor has of being sued for like giving you something that’s given you something else. I don’t know what else I can add to that?

Just anything else you want to contribute?

I’m quite happy not working; it gives me time to do most of the things that I wanted to do before. I mean we can just, at the drop of a hat, we’ll be in the caravan or whatever. My wife tends to dote on the grandsons though and basically she’ll say ‘well I’m able because my daughter works with handicapped and she takes them out on a weekend and that’s when we have the grandson, most of the weekends, so it’s quite hectic in here on a weekend. The, during the week it’s quite quiet, I’ll just poddle about doing bits and pieces and I’m usually backwards and forwards in the car, dropping paperwork off, picking paperwork up. Or I’ll pick somebody up because it’s cheaper for me to go and pick them up than it is for ringing a taxi for them. I’ve joined a photographic club with one of the lads from the Parkinson’s who, he’s quite bad now, so I’ll go down with him and we do like photo competitions and bits and pieces like that but I’m not one of these with a big, massive camera, I just use my normal one that I bought when I retired. I get a small pension from the company I worked for, but the government just takes that off you in your benefits anyway and then when my wife got her pension they did exactly the same; like we’ll get £6 a week off the pension so they take £6 a week off your money so you’re no better off. It’s saving your money whereas they keep saying ‘ah everybody should have a pension’ I mean I just got into it because it was a union thing, with the firm I worked for although I was only there four years I transferred my private pension into their pension fund and even the lad who had started my private pension said it’s the best thing I could have done ‘cos the pension money I get although it doesn’t make any difference to my thing, my income support because that’s set at a level where you’ve got ‘x’ amount to live on, anything above that, they take it off you. I’ve talked about my DLA. The new thing that’s coming in with the Government’s got a lot of people worried now; with where they’re assessing you for employment and saying if you can stand up, you can sit down, you can sit behind a desk or you can sit behind a counter so you can go to work which I don’t think is going to work because they’re putting everybody out of work anyway! But it’s causing quite a few people to have worries about when they go to see them if they say ‘oh you’re capable of work’ they, it’s not so much they change the way around that you have to go looking for a job because you can go every day and look at the thing and say I’ll apply for that job, I’ll apply for that job, I’ll apply for that job but the, it’s, if you’re getting DLA they’re going to say ‘well if you’re capable of working, why are you getting DLA?’ So I mean it’s, it doesn’t, I mean people, they’ll ask me if it’s me who’s got Parkinson’s or my wife, ‘cos I don’t have that much of a tremor; but they don’t see me on the bad times because when I go to the Parkinson’s I’m already g’d up anyway and I’ve got to take that much stuff up with us ‘cos I keep, like all the laptop and all the AV equipment here that we’ve got, I’ve got all these slide projectors, and projectors and they all stay here so when I come off the committee somebody else is going to have a garageful because I’ve got all the fund raising equipment here. I suppose if I didn’t do work for the Parkinson’s Disease Society I would just be messing about on the computer anyway doing other bits and pieces but it just gives me … and you’ll go to a meeting with other chairs and other secretaries and they’ll see ‘oh we do four hours a week’ and I think ‘well I do about 40 hours a week’ rather than just sitting about I’ll go upstairs on the computer and I’ll design next year’s, I’m in the middle of designing next year’s programme now. And I’ll spend a good 100 hours on that, just getting everything right and contacting everybody, sending letters out to ask if they could come as speakers and what have you. Like I say my medication, every time I go to the hospital they change it slightly but I’ve been one of the lucky ones I haven’t actually had to go into hospital where the nurses would give you the medication when they came round, with Parkinson’s, you know when you need it so that can be a problem for some people. But I haven’t actually been in hospital so I haven’t had that first hand. I’m just trying to think .. what else?

My pills, I usually keep my pill timer and it bleeps but I usually ignore it because I’ve had them too late before so it’s not really an advantage having them as a beeper and the only thing is I can tell if I’ve taken them because I’ve got five compartments so you know ‘oh I haven’t taken my dinner time ones’ but usually an hour after you’re supposed to take them I’ve found, I’ve started to go off so I know that it’s time to go in and take my pills. Apart from them problems I don’t have any other problems with the medication. I just, they say ‘take it’, I take it and if I get problems I’ll just phone them up. Just trying to think what else.

I’m just involved in research on the difference between MSA and Parkinson’s ‘cos they’re, one of our members who’s just recently died, he had MSA where he was originally diagnosed with Parkinson’s disease because they present the same symptoms and then he was told that he had MSA and they had only given him like ten years from diagnosis; so basically they took it from ten years from when he first got diagnosed with Parkinson’s and I think it was seven years and he died. So he’s quite a loss because I quite liked him, he was, I mean even though he was really seriously ill, he would always have a laugh and a joke. Whereas you know, you get some people ‘ooooh I’m having problems with this and I’m having problems with that’. I tend not to say if I’ve got problems, I mean I’ll go to the hospital, if I go by myself I’ve literally got to take my wife to remind us what to say ‘cos by the time I get to the hospital I’ve forgot what I’m going in for! The, because with the sleep problems, she was, it was affecting her more than it was affecting my ‘cos I was asleep, I didn’t know that I was jumping all over of the bed! I’d wake up in the morning, absolutely wrecked, you’d think I’d done a marathon!

But a couple of times when I’ve just gone up by myself, I’ve basically just will say ‘well are you having any problems with this and that?’ and I’ll say ‘no’. Just get on with it. I mean my own doctor when I first got diagnosed, he says, like I went down to see him, he says, ‘oh blah, blah, blah’, and then says, ‘well you seem quite upbeat about it’ and I says, ‘well there’s nowt I can do about it’. I says, ‘I’ve got it’ I says, ‘I’m stuck with it’ so he got quite miffed and he says, ‘well there might be something we can do medically to like make it easier’. And I thought well, you just try the pills and if they work they work and if they don’t they don’t, you just change them round. So I ended up with a cupboard full of pills! I need my shopping bag every time I go down to the chemist ‘cos I get them every month. I mean when I first got diagnosed, when I was having to pay for my prescriptions I asked them if I could have three month prescriptions and they says, ‘no the most we can do is two months’ so you were basically getting four lots of pills every two months which was costing us like £35 a month so, but I don’t have to pay for them now.

I mean basically if you’ve got diabetes, you don’t pay for your medication, you get prescriptions. If you’ve got, I forget what the other one is, but there’s something else where you, it’s a long term illness; well, Parkinson’s is long term, you don’t get better from it. It’s like if we have somebody in hospital, we never send them a ‘get well soon’ card because even if they’re not in for their Parkinson’s, they’re still not going to get better from the Parkinson’s. We’ll send them a ‘hope you’re feeling better’ rather than ‘get well soon’ because it basically, I would think ‘well why are they sending us a get well soon card when they know I’m not going to get well?’ But it’s not the Parkinson’s that kills you it’s something else usually. That’s about it.

Alright, ok, thank you very much

Well, I got diagnosed in 1997. Was diagnosed because i was poorly for a while, in a terrible state and falling backwards all the time and I just went into hospital and got diagnosed in November 97. I’d been married 20 years then and it was a big shock to find out that I had got Parkinson’s. I was only 38 at the time and I think for the next four years I was put on medication. I’m doing fine now, I take Madopar. I take a big one in the morning and six during the day. I take half Sinamed three times a day. I take Amantadinemantazin) twice a day, I take it. I take aspirin as well because I had a stroke last year in November.

So what difference has the medication meant?

I can sit up now, I couldn’t even sit up before and after (inaudible) falls ‘cos I can’t stand up and walk without the walker and now (inaudible) practice like 24 hour practice (inaudible)clinic’s on. I can’t think of anything else to say

Can you think about any experiences you’ve had in hospitals, particularly with medications in hospitals?

I was in hospital about eight year ago, had an operation and then I struggled because they wouldn’t come up with a bed for the theatre and they wouldn’t fit it under the bed saying that my husband had to lift us on to the bed (inaudible) and I couldn’t take the medications in the hospital, operation because I couldn’t take any water with it, I couldn’t take any tablets and then (inaudible) come out from theatre as well, – that was the difficulty there they wouldn’t (inaudible) they only had one porter for the ward for the whole ward and you had to get on the bed yourself so that was quite

Did it make a big difference not being able to take your medication while you were in hospital

Yeah because I couldn’t take it and (inaudible) couldn’t take (inaudible) medication

Ok, is there anything else with your experience of Parkinson’s and your medication that you’d like to share with us?

Wish I could talk properly, because (inaudible) talk a bit louder, explain

Ok, well thank you for your time and thank you for the information you’ve given us

But there was still those doubts so I went to the library, bearing in mind that Sam was just a little toddler still. While he was asleep in his buggy, I looked up a few sort of reference books in the library which were ancient, again really, really negative and I just sat in the library and just cried. And then I went home, I had a really, really lovely neighbour called Fay and she was like a mother figure really. So I told her, and again it was all negative ‘Oh, Linda I couldn’t bring up a baby with a disability. I work in a post office and there’s people that come in with disabled children and they look haggard, their life is ruined.’ And I thought ‘oh heck’ but I’d already, me and my husband had made our minds up that we were going to continue. And it was hard. The rest of the pregnancy was hard.

Anyway to sort of move forward to the birth, it was, wasn’t a long labour, it was uncomfortable as labours are, went into the hospital. Soon as Alfie was born basically, we knew. Don’t ask me how because I’ve never seen a newborn baby with Down’s Syndrome, but the atmosphere just told us everything. I think, I don’t know about everybody who’s in labour but once I’ve had the baby, you go into a bit of a shock really. And all I noticed was no sounds, no smiles, my husband went over to a window and he was, well he was crying basically but while I was in labour I said ‘Oh M will you tell me when the baby’s born if everything’s alright?’ He said ‘well how will I know?’ ‘Cos at the time you don’t think you will, but in actual fact as soon as Alfie was born, the atmosphere just told us all. ‘Cos I mean the midwife knows more than I do, and obviously he was much more floppy, he had those characteristics that, I don’t know, I probably wouldn’t have recognised because I’m not in that field. So the atmosphere was just awful and I went into I think a worse shock really, thinking ‘oh God, how we going to tell people? How’s the rest of our life going to be?’ and sunk into a depression really. So we even had thoughts of moving to New Zealand to avoid people because we just thought it was that bad. I don’t know, it’s just all sorts goes through your mind. You just sort of think that you’re one in a million, but you’re not, when you learn more.

Anyhow, we brought Alfie home after about three days in hospital. And looking back, it’s still hard, even ten years on, looking back because I had feelings, such awful feelings of what I’m going to tell you next.

Basically I’d breast fed two children very well, for six months, maybe a couple of months more; with Alfie because I didn’t know a lot about Down’s Syndrome, I thought he was feeding OK, breastfeeding and again not knowing much about Down’s Syndrome, Alfie slept a lot so I did my best to feed him fairly regularly but he just seemed to want to sleep and people were saying ‘oh God, you’ve got the ideal baby, you’re so lucky, don’t complain’ and a part of me thought ‘this isn’t right’. So in the middle of the night I was setting my alarm to wake him up to feed him and I honestly could have picked him and dropped him on the floor and he wouldn’t have woke up. So I just thought ‘oh that’s Down’s Syndrome.’ So anyhow of course you have your daily visits from your midwife and I said to her ‘well that pile of nappies there isn’t going down. He hasn’t had a poo’ …. ‘Oh don’t worry it’ll be low muscle tone and or it could be constipation, so don’t worry.’ So everyday I’d mention it again, ‘he doesn’t seem to be weeing much and he hasn’t had a poo again’ and me saying that didn’t seem to acknowledge that there could be a problem there. Because looking back I think ‘well, how stupid that I didn’t put two and two together. If there’s no wet nappies, obviously there’s no fluid getting in him!’ You know, my milk wasn’t getting, he wasn’t suckling like I thought he was.

Anyway, thankfully on day 11, the health visitor comes on the scene. And I knew this health visitor from when Helen was a baby because she was the same health visitor and she’s a lovely person, obviously experienced in her work. And when I told her my tale, I think she could tell by looking at me anyway, because a woman who’s breastfeeding, her boobs are absolutely full basically and she could probably tell that mine weren’t. And she said ‘Linda I want you to straight away start expressing milk’ so I thought, ‘right, I haven’t got an expresser but I’ll get one off my neighbour’. So I quickly, can you, ‘I need to express the milk, have you got a machine I can use?’. She said ‘yes’ so I started but not a lot was coming through because this was day 11, I’d not really breastfeeding successfully and the milk wasn’t, you know it ‘s like a supply and demand effect. So she said ‘start expressing every two hours’ which, if you think I had two littlies, little Alfie there, fair enough he was sleeping a lot but I had Sam as well who was 17 months. So I did my best to get things rolling. I thought ‘blooming heck, this is serious, something’s not right’ anyhow my health visitor rang me up later that day and she said ‘Linda’ oh ‘cos she had said she would arrange for me to go to the doctor’s. She said ‘I’ve arranged for you and a hospital bed, I want you to go down there straight away.’ So we went down, bearing in mind at this time Alfie as I say was sleeping a lot, there was a blue tinge round his mouth, which meant nothing to me, to be fair. His eyes were really wrinkly, like dehydrated it would have been, I didn’t know at the time, I just thought ‘oh it’s just this thing called Down’s Syndrome’ but looking back it all started to fit into place that ‘blooming heck, that wasn’t a well child laid on my settee.’ So we went down to the hospital, consequently we were in there for 12 days, basically feeding him up and getting him well. I don’t know the exact what’s in his notes, but I would believe that he wasn’t well at all and I think if my health visitor hadn’t come on the scene we could have lost him, I really do.

So in the hospital, were you and Alfie together all the time?

Yeah, yeah. We were together all the time. I had to go down into the intensive care baby unit to use their electronic machine to express milk. So for those 12 days in hospital, Alfie was being cared for, very well. I felt that my needs were sort of ignored, I was just a mum. And I started to get quite paranoid in hospital because I was in a little room on my own with Alfie. Every time I heard people laughing, I thought they were laughing at me. When I first went to express some milk there might have been an ounce there and I thought ‘blimey that doctor’s just tutted, how bad am I? What a bad mother I must be.’ I felt totally inadequate basically. Anyway, and what was awful was the fact that nobody mentioned the word Down’s Syndrome. I was Mum, Alfie was ‘baby’ and I thought ‘do people know?’ I really thought that people didn’t know. And I don’t know I just had awful, I was thinking ‘oh people are laughing at me because of my age and oh they’re laughing because ‘she shouldn’t have been having a baby at her age anyway’ and all these things, honestly were going through my mind and it was awful.

And after about a week a doctor came in and he asked me ‘how do you feel about having a baby with Down’s Syndrome?’ And I thought, and it made it real then. And I said ‘well, to be honest I’m a bit unsure about my future’. And he said ‘well nobody really knows what’s round the corner and life isn’t easy for any of us’. And I thought ‘well I know that because, you don’t need to tell me that!’ Anyhow he suggested writing things down. He said ‘have you thought about writing things down?’. So I did, so I started to keep a little journal and I wrote a letter to a magazine. And I wrote to the Gazette about my experiences. And it was the health visitor who sort of, I think to take my mind off it a little bit, she said ‘Linda why don’t you think, there’s nothing out there, why don’t you think about setting up a support group?’ So I wrote to the Gazette about my tale – that was publicised. And then suddenly I thought, I was on that sort of, not a roller coaster as such but like a treadmill of learning more about disability and accepting it.

And then with the breastfeeding I was absolutely heartbroken that I wasn’t breastfeeding and then this other trainee doctor came in and he was lovely, he had a sense of humour, he made me feel quite normal and he said ‘oh my wife had a problem breastfeeding’. So that made me feel ‘oh there is other people have problems out there, whether they’ve got a child with Down’s Syndrome or not’. And he said ‘oh all she did was express milk into a bottle and then the baby, instead of getting formula was getting her milk.’ And I thought, ‘well why didn’t I think about that or why didn’t anybody sort of suggest it?’ So simple. But when you’re sort of in the thick of it and you are depressed or you are grieving or you are, you know, just going through that emotional, it was awful really. And just the simplest things, if they’d been suggested would have made such a difference. But I think sometimes people presume that because you’ve had two children already, that you know what you’re doing. And that isn’t the case, because having a baby with Down’s Syndrome is a total different kettle of fish. i.e they do have low muscle tone, I know that now, and that includes the mouth! It’s not just the limbs, you know it’s everywhere, it could be the tongue, it could be anywhere.

Anyway, going back to the midwife who I was quite disappointed in, she would come and visit for those first 11 days and before I told her about the nappies she was saying ‘oh hi Linda are you alright?’ Well me being as I am, I would say ‘oh yes, fine thank you’. But surely nobody would be alright if you’d just given birth to a child with a disability, you’re not going to be alright, I don’t think. But I pretended I was and I think with me saying that, she thought ‘whoof, I’ll just get on and talk about me own children, or talk about the weather instead of about little Alfie there being this model, perfect baby, just sleeping.’

And I must admit, what I wouldn’t do, going back in time is have as many visitors. You know you feel dead popular and it’s lovely people wanting to see your baby and, but it’s so time consuming and it’s tiring.

So do you mean professional visitors?

No, I mean friends

Friends as well?

Yeah, yeah. I would, you know because people do – whatever your child, whether it’s born normally or with a disability or illness or whatever, you get that many visitors the first few days or weeks, then it all stops! So I would much prefer, if it was my own daughter for instance or anybody is – spread out your visitors, don’t have them one after another, just in case there are any problems. There might not be but just in case, because that takes up your time and I remember one friend afterwards saying ‘eeh Linda when you went upstairs, I actually went over and prodded Alfie because I wasn’t sure whether he was alive.’ So that’s how still and quiet and different he was. (I’ll just look at my notes)

Fine

So anyhow, moving on, when Alfie was about two, that’s when I started doing my talks at the Durham University. And I think it is very useful to talk to professionals from my perspective ‘cos I’ve been there, I’ve had the t-shirt, still wear the t-shirt. Anyway, as time went on, as I said Sam was diagnosed with Asperger’s Syndrome. Alfie at the age of four or five was also diagnosed with Autism, so in effect I’ve got two. I’ve got Helen who’s a young adult, I’ve got my two boys who are like kids from different planets. Absolutely, one at the able end of the spectrum and one obviously with severe learning difficulties and severe autism. So family dynamics are very, very difficult. And I wish sometimes that professionals, and not just social workers, but I wish they would understand more about what life is like. Not just the little half hour snapshot because Alfie is beautiful, he’s endearing but he’s hard work – because he has got a little bit of hyperactivity as well. He’s ten, he doesn’t speak, he’s non-verbal, he’s still in nappies day and night and very, very dependent and probably always will be – which, you know, we accept. But what would be lovely would be to have more support and more understanding from professionals. I can understand, being honest, why marriages split up and I can understand why, when I see in the newspapers and on the news, parents with the children, might go to a bridge and throw themselves off. And I’m only being honest but I can empathise with them because it isn’t easy and people just do not understand. A lot of people are very presuming. For instance, I do live in a nice house, it’s not a mansion and I’ve worked hard. We’ve got a nice house, I’ve got a lovely husband but that doesn’t mean everything’s OK inside them four walls. It really doesn’t. And it doesn’t mean because Mum might be like smiling, might be positive that things are alright because if you read between the lines or have the time for a conversation, people would realise that it just isn’t, it’s very hard. And there is support networks out there but what does support mean?

That’s right yeah, it’s one of the things I was going to ask you actually, is you mentioned when you went into the baby unit first with Alfie, like you said, you know there’s mother and baby and there doesn’t seem to me much meeting for the mother’s needs

There isn’t

Yeah, but what sort of needs do you recognise …….?

What I passionately believe that parents should be offered such as ourselves at the time ten years ago, is some sort of listening service for the mum and dad, and siblings. It’s optional, it’s that you know it’s there for when the right time is, because nobody knows when the right time is for advice and information support; but it’s good to be aware of the way, somebody can signpost it when you’re ready. For instance when children have a genetic condition I believe that they’re automatically given the option of some sort of listening or counselling or whatever you want to call it, but with any other condition, there’s nothing like that offered. You’re just left, you get the label, go away, get on with it. If you need any support, refer on to a social worker but there’s no real support

M Support would be things like information?

F It would just be, I mean if I went to a support group and I’m on the committee of a support group and I’m really proud of it. But if there’s a lot of you, you don’t often want to talk in front of a lot of people about what your day’s been like or … I mean that happens more in a one to one. But in a support group, it’s a group – so there’s not often opportunity to have somebody there where you can just go in to another little room and say ‘look, this is how I’m feeling; are these feelings normal?’ Or it could be somebody in the group who knows where to signpost. Because I’m on this support group but I can’t, I haven’t got the qualifications to literally counsel somebody if you like, but I know that I can signpost them to somebody. But back then when Alfie was born there was nothing like that, there was Down’s Syndrome Association in London and I think there was one in Newcastle but that was the

M It’s quite limited really

F so quite limited. There’s more now, thankfully. So yeah, I think other family members must be taken into consideration not just that, the person with the label. Because at the end of the day he was being looked after, he’s none the wiser, he’s a baby but everybody else, I mean poor Helen, she must have thought ‘well hang on, me Mum’s pregnant, why isn’t she mentioning to me because I’ve overheard the story but Mum hasn’t mentioned that my brother might have Down’s Syndrome’. And when he was born, he was just a baby. And he was.

M I mean it was interesting what you said before about when the midwife came round and knocked on the door with the results and you said you didn’t want to sort of like tell your family and friends. What was the decision behind that – was it because you thought ‘oh I’ll be able to soldier on or …’

F Well I wanted to soldier on because I am quite a strong character and I just didn’t want any sympathy

M Right

F And that’s what I would have got off a lot of people. And I just wanted to go on and enjoy my pregnancy as best I could. I mean I did have my moments where I just wanted to cry and probably did cry. But again no one to talk to. Yeah that’s what I’ve missed out really, quite an important point. We did have extra scans throughout the pregnancy and I’d said if there was anything there that was really serious, I might have to terminate the pregnancy. You know, say it was very serious, heart defect or… that’s my thoughts at the time. Anyway but then I started having nightmares thinking ‘blimey, after these scans we’re having, if summat shows up, and I’ve over 20 weeks pregnant, will I have to give birth?’ And it really did prey on my mind. So one day, Sam was asleep at home and I rang up the hospital, I said ‘I need someone to talk to, I’ve been told there’s a 1 in 20 chance, I’ve got no one to talk to and I’m worried sick that if one of these scans shows up something really serious and we decide to terminate, can you put me to sleep?’ Basically, can you give me, you know what I mean, an epidural and all, not epidural even, a Caesarean?

M Caesarean right

F And they said no they couldn’t do that because it’s more risk to you because it’s a serious operation, you’d have to give birth. So I was left to think ‘oh my God if any of these scans show up anything serious and that’s our decision, I have to give birth to a live baby?’ Anyhow the lady on the end of the phone at the hospital was lovely. She said ‘ah if you want to come down, come down’. I said ‘well it’s not as easy as that, I’ve got Sam here, he’s asleep in bed but I just need my questions answered basically’. So it just shows that people do need someone at the end of the phone or … But I’d lost trust in the midwife by that point ‘cos of the way she broke the news; the way she made it all so negative.

M You know the health visitor, the person who came to visit you, was she not able to sort of answer your questions about those concerns?

F Well she was only around for so long

M Right, I see

F She probably could have, but once we’d been admitted to hospital, and we came home I can’t remember that she was still on the scene. Because I think they’re only there for so long, a certain chunk of that time. But she would have been the ideal person, yeah, but again your thoughts aren’t clear at the time at all, so yes that was really hard that um, who could I talk to about my concerns, because there was nobody.

Anyway looking at Alfie, Alfie was born with Down’s Syndrome but it was also found that he had a hole in his heart which is quite common in children with Down’s Syndrome. So he had lots of tests and things to see whether they could do the surgery through his groin, you know it’s quite complicated but rather than doing the open heart surgery, they were hoping they could do it that way but after going up to Newcastle the hole was bigger than what they thought here.

So anyway to cut a long story short, we knew that Alfie had a hole in the heart and it would actually need open heart surgery and they would prefer to do it before he went to school. So it wasn’t urgent, the hole was there but all babies are born with a hole in their heart apparently, but it closes up itself. But Alfie’s didn’t, but I remember it was the 5th November which was bonfire night and we got a call from Newcastle, this was a Monday or a Tuesday, saying ‘we’ve got a place on Friday for Alfie to have his operation’. And I thought ‘can’t do it, can’t put him through major surgery because there’s nothing wrong with him, he’s a healthy boy, he’s fine’ because there was no obvious, there was no breathlessness, there was no, nothing, but it was something that had to be repaired. But what was great at Newcastle, they had sort of an in-between person, can’t remember what her role was, well what the name of the role was but basically she was a go-between to ask any questions. And she said it’s perfectly normal how you’re feeling, if Alfie was like, if you felt he was really ill you wouldn’t hesitate, ‘cos his appearance and his you know, basically healthy child, it’s much harder to make that decision to go for surgery and I said ‘well I’m worried about Helen and how do we involve Helen in all this?’ And she was so good, she was absolutely fantastic for advice and support and ‘oh the surgeon you know is one of the best that you could wish for’ and really made us feel at ease. So anyway we went off to Newcastle for surgery, had the surgery on the Friday. By the Sunday lunchtime he was up and running around as if nothing had happened. It was absolutely amazing. The only thing we had to be careful of is how we lifted him, because of the big scar on his chest. But it was amazing. ‘Cos when they are sore, they appear poorly because they’re all wired up and you know they’re asleep and you think ‘oh, is he ever going to be Alfie again?’ anyhow he soon was, probably sooner than what we’d have hoped, ‘cos he always has been quite a livewire. So that was quite traumatic to be fair. You know, any child going through surgery, but I think Sam had prepared us a little bit because he’d had a couple of minor operations so we’d got used to that sort of thing about going to the hospital, signing forms and having operations explained etc.

Other things that Alfie’s had to endure – an eye squint, he’s had surgery on an eye squint but again no problems, no qualms with any of the staff, all absolutely lovely. He’s had grommets fitted in his ears. At one point we did think he was deaf and that came from a professional, told me that it seems he’s profoundly deaf so that was another hurdle. I thought ‘oh, bloomin’ heck’

M So how old was Alfie when?

F Oh he was quite young, he was about three, BECAUSE that was the autism setting in. ‘Cos he’s so focused in his own little world, he would just ignore everything else no matter how loud or quiet, he would just focus on what he wanted to focus on and usually it would be something he wanted to twiddle or sort of a reflection in a mirror, or something quite, so yes so that’s. And even now if you met Alfie you would think he was deaf because he doesn’t reply to his name, doesn’t wave, doesn’t point. But he isn’t. He can hear a sweet packet open like the best of children out there! So there’s certainly no problem with his hearing.

He’s had no chest infections which children can be quite prone to with Down’s Syndrome because all the sort of airways and the make up of the face and ears, nose, everything is quite different to ours; but back end of last year bless him, he did develop pneumonia. And that’s the first serious illness we’ve had with him so I feel quite fortunate about that. Yeah but it wasn’t nice and I’d certainly know if he was going along that route to get pneumonia, what to look out for i.e the way he was breathing. Yeah, now that we’ve been through it I’d know what to look out for, the signs and get him to hospital sooner.

But … but yeah, he’s absolutely beautiful, all my kids are beautiful I have to say. Let’s have a look through my notes, that’s about his hearing.

Yeah with the autism, I’m going to blame the autism not the learning difficulty, he’s got no sense of danger, absolutely none. And a sort of kick up the backside for me and dad, basically, was the day that he jumped out of his bedroom window, and survived thankfully – it was a miracle. It really was. Alfie has an obsession with water, absolute obsession, it could be a puddle, it could be taps, it could be a pond, it could be his own wee, ANY sort of flow of water or even stagnant water, and we didn’t really realise how bad it was until this day. It was a day in June, 13th June and it was some famous footballer on the telly, can’t think who it was now. Anyway, I’d put Alfie to bed and it was a really, really hot day, we’d been to South Gare for the day so I was red raw from the sun. Anyway I put Alfie to bed, went up to check on him, opened his bedroom door and I must have just slightly, he was probably just almost asleep, as I’ve opened the door I’ve woke him up, but didn’t think I’d woke him up fully. Anyway I went downstairs, sat on the settee with my half a lager and bag of crisps, thinking ‘oh I’ll watch the second half of the football’. Mark was out because he was out every Sunday night (yeah football must have been a Sunday). Helen had left home at this point but she was there. All the windows were open because it was such a hot day. So I’d just sat down, the sprinkler was on outside, the garden sprinkler. Next thing I heard was an almighty thud. I jumped up, looked out the window and there was Alfie on the ground. So I just screamed to Helen ‘999’. I just screamed and I ran outside and I just scooped him up off the floor and he was limp, he was unconscious then basically. I started going absolutely berserk. My neighbour came running round ‘Linda, Linda what’s happened’ and I explained. She said ‘Oh Linda you shouldn’t have picked him up, with a fall or anything you have to leave them.’ I said ‘I can’t, I couldn’t have left him on the floor, he looked like he was dead’. So anyhow I picked him up ‘cos I was like really, I’d gone hysterical. He came round. Anyhow the ambulance came so quick, so we rushed off to hospital, stayed there till the early hours of the morning. Mark came along and like I say it was a miracle, all he had was a black eye. BUT he hadn’t fell out the window, he was on a mission, the water! And that’s what really made us realise then, bloody hell, do you know what I mean? He has got NO understanding of danger whatsoever. ‘Cos I didn’t really know a lot about autism at the time, you know I’ve had quite a learning curve, quite a steep one. Yeah so it was, it was a miracle the fact that Helen was there, the fact that I’d sat down, ‘cos normally kids are in bed you sort of potter round. I’d heard him fall. Where he fell was a miracle because it was wet with the sprinkler, he’d missed quite a wide part of the paving underneath the window, he’d missed the open window downstairs, which could have been fatal couldn’t it, landing on that? He’d landed in my border which had cobbles, not little pebbles but cobbles and then there was a gap of nothing, just like mud if you like and then more cobbles and his head landed in that soft gap. It was amazing, absolutely amazing

M It’s incredible that

F Yeah, so obviously since then we’ve had to put a lot of things in place at home and at school, respite, everywhere he goes to ensure his safety. Because he would run off and as he’s got older he’s got quicker, as he’s got older he’s got stronger. I mean he has got out of the window once since, and that’s with his dad, it could have been me. That’s why we hesitate who we leave him with. Because if things like that happen with us, it, you know it could happen even more so or maybe not, ‘cos I guess if you leave somebody who you trust, leave somebody with somebody that you trust, they’re probably, I’m not saying they’ll take more care, but they’ll probably shadow him more than a parent. I don’t know, but we have to be so careful really that people understand Alfie’s needs because even Helen, his big sister, ‘cos she’s left home she’s become more like an auntie and even if she holds his hands when we’re outside she doesn’t understand still, if she doesn’t hold his hand tight, he’ll let go and he’ll be on the road. So he’s, he is hard work and what makes things harder at home is the fact that him and his big brother are so different. We acknowledge that. You can’t force people to get on, you can’t force people to play and over the Christmas holidays, it’s been hard because one person said to me, ‘Linda, what went wrong?’ meaning ‘What went wrong in the family’, ‘why do your two boys not get one, why don’t they play?’ and that was a family member. And I went to bed with those three words …. ‘what went wrong?’; thinking ‘is it me? Am I a bad parent? What have I’ I don’t know but it’s not nice to hear. But again it’s just people don’t understand and it is hard. I mean they’re all fantastic kids, but so different. But me and Mark are getting on with what we’ve been dealt. It isn’t easy but we love the kids

M What are your hopes for the future?

F For the future, Helen is quite happy, she’s single, she’s working at the hospital, she enjoys that.

Sam has just started senior school. He’s coping very well. I think if he’s understood by everybody there’ll be no problems. Because he’s a little bit quirky. He is a little bit lacking common sense sometimes but very intelligent in other areas. So I don’t really worry too much about his future. I think he’ll end up with a fantastic career, as long as people understand him that he’s not sociable and just to be understood.

Alfie, to be at school till he’s 19 and he’s in an absolutely fantastic school at Redcar, a special school. Haven’t given a lot of thought as to what will happen after that, but he won’t be at home. You know I’m 50 this year, and it’s only natural that children grow up and they leave home. So we have to sort of find a sort of lifestyle for him and there is options out there. Admittedly a lot of them are out of area, which is a bit of a shame, but no, I just hope Alfie continues to be so happy. And he’s a pleasure. And I don’t regret a thing. And anybody who’s out there who’s going to have a baby with Down’s Syndrome, ‘cos I understand Down’s Syndrome, celebrate – go out and celebrate. Because I wish I had, I really do, because he’s brought so much … I’ve been to things like, for instance ice skating at Billingham with Alfie, except you can go on with him in his buggy or a wheelchair and I can go in with my flat shoes on and it’s inclusive. It’s something that you wouldn’t think a child in a wheelchair would be able to do, but they can. I’ve been cycling with adapted bikes with Alfie which is fantastic. I’ve been to the Calvert Trust and that’s an organisation that do sports and they challenge. They won’t say no to anything. So Alfie, despite his obsession with water, has been canoeing, he’s been sailing and I think he’s lucky because he’s got me now, I like to do all these things so .. he’s been on this fantastic zip wire – I’m at the bottom, he’s up there getting harnessed and ‘wheeee’. ‘Cos I know what he enjoys, do you know what I mean, and he is an active boy, but that’s when he’s at his best. Yeah, so we’ve and I’ve met some lovely people, I’ve helped a lot of people, so yeah, we’ll see what the future might bring.

M If you were to give birth to Alfie now, and knowing what you do know now, do you think things will have changed? People’s perceptions of children with Down’s Syndrome, how they treat you and

F Alfie little bit

M Yeah? Alfie little bit

F A little bit. Yeah I mean to be fair, I think because Alfie is so endearing, he’s so innocent and ‘cos he doesn’t talk and things, he seems younger than what he is. We’ve had very few adverse comments or tuts and things. You know, say ‘cos I’ll be like, see if he’s thirsty, he’ll just take a drink so it could be a family sat there you know having a few, you know Capri Suns or whatever and Alfie …. I’m thirsty, there’s a drink, I’ll have it. So there I am apologising profusely and most people when they see it’s Alfie, they’ll say ‘it’s fine, don’t worry’. A couple of times I’ve had like people, ‘cos he can be quite loud, vocally and so, and it’s understandable, if I had somebody suddenly screech or go ‘eeeeeee’ behind me I would look. And I accept now that in the early days you’d think people are staring – but a lot of the times they’re not, they’re curious for whatever reason. ‘Cos I will, if there was somebody over there with a child with Down’s Syndrome I would be DYING to go over and say ‘hello’ but I’d be looking, thinking ‘should I or shouldn’t I?’ and I’ll be seeing what their child. And it’s like with any child growing up you do, you don’t intend to compare but you do, you sort of look and see what’s similar or what is dissimilar. But I would hope things have changed. The main, I don’t know I think the autism is the hardest part for people because it’s a hidden disability. So I think that’s the hardest part for people to understand, you know a child who’s past that, SHOULD be past the age of tantrums, is still having them. And people think that’s bad parenting and it isn’t. It’s just that child has got a lot of complex issues going on in their brain, especially round sensory things. So I would hope for more awareness really about autism in the next ten years.

M Yeah. Do you feel that people THINK they’re aware of autism, ‘cos it does get quite a lot of publicity doesn’t it?

F No, people think they know because they’ve seen Rain Man or, and that’s … it’s a spectrum and they’re all so unique, so different. It’s fascinating, absolutely fascinating but complex, yeah you can’t just say, you can’t just think you’ve read a book or you’ve seen a film and understand it. You just can’t, no it’s quite, it’s amazing. So yeah life is difficult but challenging, rewarding, interesting, keeps me going.

So yeah, I’ll just check my notes so I haven’t missed anything.

Yeah, one thing I’d like to say is once Alfie was born and I’d got over all that grieving, accepted my child with Down’s Syndrome and looked forward to teaching him, I bought all these resources to help teach him, everything, colours to speak, matching pairs, everything like that. And then when he was diagnosed with autism, I had to go through all that grieving again, ‘cos I’d lost that child with Down’s Syndrome and a child with autism is a total different kettle of fish. So I did go through a little while of thinking ‘I want a baby with Down’s Syndrome only’. Because I’d really got my mind set on that, and I think my aspirations were a little bit high so I had a long way to fall. But yeah I did go through a period of grieving again once that diagnosis

M Did people understand that?

F Professionals did

M Yeah

F Some, like Alfie’s psychiatrist did. The community nurse understood, but no lots of other people don’t. And grief is a complex thing, you know ‘cos men and women sort of deal with it quite differently so, but no

M You said your husband didn’t quite understand …. at the time?

F Well, he did obviously he was there when we got the diagnosis of autism but I think to Mark, it was just Alfie, no matter what the label, which is a good way to look at it, where I was thinking more deep, thinking ‘oh I’ve learned all of that about Down’s Syndrome now I’ll need to go and learn more about autism’. Where Mark just, I think, lives more day to day, just gets on with it. Yeah. I think some men sort of might, ‘cos I know a lot of families, some men sort of put their head in the sand to ignore it, other families I’ve met, grandparents can be quite a challenge because they tend to ignore it, think it’s going to go away. They’ll say ‘oh one day it will, you know he’ll meet a lovely girl and get married.’ But some children it’s obvious, I mean Alfie probably won’t to be fair. But I think sometimes grandparents want to make it better, they want to fix it. And that’s quite hard for the mum or dad sometimes – ‘cos deep down you know it can’t be fixed

M Grandparents are sort of like trying to put on a very positive front

F Yeah some put on a positive front and some I’ve come across totally ignore it, ignore that child. And again it’s probably their grief and no one to share that with; that ‘hang on do you realise what you’re missing out on, it’s a child’. But sometimes whatever, it could be something that’s happened in the past or…. So relationships can be affected in lots of ways. I think, I mean we’ve only got Mark’s mum, grandma and she was quite tearful in the early days, sort of rushed us out ‘cos the Salvation Army were playing in the street, ‘come on, bring Alfie out’ as if you know, something was going to cure him. But she’s accepted him, yeah. So yeah, it’s quite a journey but could have been better IF there was more positiveness at the beginning. It’s too negative, this thing about disability just equals negative thoughts and actions.

M ‘Cos you obviously recognise potential, you know in obviously all your children but because there are very special circumstances as well, there’s got to be special considerations but you can still have that sort of vision of what these children can be like in the future as well, yeah?

F Yeah, yeah honestly children with Down’s Syndrome are beautiful. And they are all so individual. I mean I’ve seen little girls of about say 11, and they’re proper flirts. And they like to wear all the clothes like Girls Aloud, just like any other 11 year old. But they might not talk very clearly, might be a little bit slower, some on the what I would call Down’s Syndrome spectrum, some of them are more, probably more able than some people without that label. Because you know some have gone to university, not many, some drive, some do get married. So you never know, you never know with that child that might be born with Down’s Syndrome, what’s ahead. Nobody does do they?

M No

F With any child? Nobody knows what’s ahead. I’m at a funeral tomorrow, of a young lady who’s just died, 16 and I’m, when people sort of complain about the children, not in a negative way but in whatever way, I think ‘well, they’re still here. The main thing is that they’re here’. So make the most of every day. Yeah.

M Well I think that’s a good positive message to end on because I know you’ve got to go, somewhere else you’ve got to be. So, thanks very much for sharing that experience with us

F You’re welcome

M We really appreciate it.

F You’re welcome